What is neuropalliative care?
Neuropalliative care helps children with serious medical conditions. Caregiving can help families set goals and make treatment decisions for children.
Palliative medicine, by definition, describes medical care that focuses on relieving symptoms, discomfort, or stress caused by a serious illness. Traditionally, this has meant supporting children with cancer. It is also estimated that almost half of the children who can benefit from palliative care services live with neurological, degenerative, or genetic conditions.
Neuropalliative care is designed to meet the ongoing needs of children with chronic neurodevelopmental deficiencies such as cerebral palsy, muscular dystrophy, spinal muscular dystrophy, and spina bifida. Neuropathic care does not mean life-long care or palliative care; Ultimately, it improves the child’s enjoyment of life and spends more time with the family.
Neuropalliative care is an important resource for patients and families confronting severe brain injury. Although many clinicians equate brain injury with certain death or futility, survivors have substantial needs that might be met by palliative care expertise. This chapter suggests that the boundaries of palliative medicine include those with severe brain injury, most notably those in the minimally conscious state and that with this nosological expansion practitioners of palliative care reflect carefully on often nihilistic attitudes directed towards patients with disorders of consciousness. This chapter establishes how to better meet the needs of these patients and their surrogates, reviewing definitional criteria for the vegetative and minimally conscious states, highlighting advances in diagnostic and therapeutic interventions (such as neuroimaging, drugs, and deep brain stimulation), and considering what neuroprosthetic devices tell us of the capacity of patients to experience-and functionally communicate-pain, distress, and suffering.
Support for neuropalliative care
Many of our patients with neurological disorders experience chronic, life-changing conditions due to their diagnosis.
Neuropathic care focuses on the physical and psychological management of neurological conditions, supporting family, friends, and caregivers affected by the patient’s diagnosis and prognosis.
Patients affected by the following conditions can benefit from assisted care:
- Amyotrophic lateral sclerosis (ALS)
- Huntington’s disease
- Multiple sclerosis (MS)
- Muscular dystrophies
- Parkinson’s disease (PD)
Our care for Neuropalliative care
We work with your current providers to create a roadmap for your care. Starting conversations early in managing your illness can prepare you and your loved ones well for the road ahead.
Our program includes the following:
- Physical, mental, and cognitive problems, including memory, pain, and anxiety
- Counseling for spiritual, social, and psychological problems related to your illness
- Transitions in Future Planning and Care: End-of-Life Options, Advance Instructions, and Palliative Care
- Access to social resources
- Communication between caregivers and patients
- Caregiver support and rest
Conditions Neuropalliative care treatment
Neuropalliative care consultations are useful for children or adolescents:
- Experiences that cause physical symptoms, such as recurring pain, shortness of breath, or trouble eating
- You have new or chronic health problems that require long-term maintenance
- Shows signs of deteriorating health
- We are faced with important care decisions in months or years
- They were hospitalized for a long time with no clear discharge goals
- Experience multiple hospitals in six months
- You live with a life-limiting condition or have been recently diagnosed
- Have concerns related to physical, spiritual, or emotional needs
- Palliative care can help families develop strategies to address medical crises, illnesses, and interventions